We’re in the final week of our fourth three-week intensive at NAPA Center. Once we wrap up on Friday, we’ll have completed a total of six intensive therapies with NAPA and several at other clinics, and while I’m far from being an expert in navigating the world of intensive therapies, I now feel confident in what to expect when we walk through the doors on Day 1 of an intensive.
While there is a lot of planning and paperwork that goes into an intensive, without a doubt, one of the hardest parts of intensive therapy – aside from managing Solly’s fatigue and constant need for motivation – is setting goals at the onset of treatment. Goals are vital to the success of intensive therapy. They help the therapy team understand what I envision for Solly; they guide the therapy team in developing a plan for the duration of the intensive; and they can also dictate Solly’s confidence throughout the intensive therapy. Too easy and he quickly becomes board. Too hard and he doesn’t want to participate. For these reasons, there is quite a bit of pressure for me to fine tune our list of goals before starting an intensive.
I’m fairly certain when we signed up for our first block of intensive therapy, my goals were broad, grandiose, and probably something as outlandish as “I want Solly to walk.” For some children, this might be a perfectly reasonable goal. However, as we’ve found with Solly, his brain needs help rewiring to learn all the intricate movements that babies learn as they develop typically, resulting in walking. Because of the size of his strokes, we have to work hard for every single inchstone, teaching him things as simple as bringing his hands together, keeping his head centered, and reaching for toys. Every single skill Solly has learned has been the result of extensive therapy and the hard work of his therapists.
Before having kids, I worked for a woman who wasn’t afraid to set huge, unthinkable, seemingly unreachable goals, both for herself and for her employees. We referred to these crazy goals as “BHAGs”: Big Hairy Audacious Goals. Even though we felt a bit crazy setting some “out there” goals for ourselves, doing so really kept us focused on our work and motivated to chip away towards them.
Though I’m no longer working full-time, I have carried this idea into my new life as a special needs Mom, setting big, scary goals not only for myself but also for Solly. One of our BHAGs for Solly is independent walking, without any supports or assistance, even if just for two steps. I keep this BHAG at the back of my mind at all times, for every single thing we do for Solly. While walking IS an end goal for Solly, walking is not a realistic goal for an intensive therapy.
Instead, we break our goals into tiny, bite-sized pieces that are much more attainable and well within reach. What I’ve learned over the course of our intensive therapy experiences is what inchstones the brain and body must hit in order to reach the much bigger goals, like taking independent steps. Things like body awareness, balance, the ability to shift weight, milestones like kneeling, tall kneeling, half kneeling – first with assistance and eventually independently, are all examples of what needs to be accomplished in order to safely take steps.
So, instead of “walking”, here’s a list of the goals we’re currently focusing on:
- All ground transitions, like going from laying down to four point to sitting; going from four point to half kneel; going from four point to standing, etc.
- Side stepping
- Any movement focusing on weight shifting
- Weight bearing through both hands (really important as we’ll eventually want to get Solly walking while holding on to a walker)
- Standing with bent legs, since Solly often gets stuck in hyperextension
- Finding ways to stay on top of Solly’s sensory seeking and sensory avoiding habits
And I’m proud to say that, after the past couple of weeks, Solly has made great progress towards achieving all of these goals. He’s *this close* to being able to get from laying on his tummy to hands-and-knees position all on his own – only requiring a finger or two of support to guide him through the movement. He can stand with support at his knees and hold his balance while weight shifting to take steps. For the first time, he’s initiating steps when working on side stepping, only requiring assistance to move his legs to the side.
We’re calling this block of intensive therapy wildly successful and much of that is because we set realistic, reachable goals to not only set the intention and direction for each type of therapy, but also to manage our expectations of what to expect out of the three weeks and to make sure that Solly stays confident in his abilities. It may take Solly some time to reach these goals, but he’s making slow and steady progress to achieving them and getting closer to more independent movement.